Guest guest Posted August 4, 2011 Report Share Posted August 4, 2011 Liz, I may just take you up on call and screaming. To much in one year to deal with. I think I been cursed. Cyndi B > > > ** > > > > > > Group, When was in the hospital and the Dr.'s were throwing out causes > > for 's illness but they were unsure I was scared. Now that 's test > > came back positive for HLH my world is closing in on me. Today the > > realization that there is no cure for HLH and his only chance is a bone > > marrow transplant really hit home. I am of course going to get more opinions > > on HLH as a true dx for but I am so upset. HLH is like a cancer > > although it is not cancer. I am posting a link with more information on > > 's condition. Tonight at dinner I cried looking at and realizing I > > am going to lose him. I will not give up without a fight but it still > > saddens me. Right now I do not know how long the Dr. is thinking he might > > have without a bone marrow transplant but from what I have read the patient > > has 3 yrs from onset that they pass away. I hope we can put this into > > remission. My heart is breaking right now. I kept telling the Dr.s something > > was wrong with . I am still not sure this is right. There will be more > > medical opinions. Cyndi B > > > > > > > > > > -- > " Anyone can give up, it's the easiest thing in the world to do. But to hold > it together when everyone else would understand if you fell apart, that's > true strength. " - Reeves > " Let me win, but if I cannot win, let me be brave in the attempt'. - Special > Olympics Motto-RIP Eunice Kennedy Shriver > > " When we long for life without difficulties, remind us that oaks grow strong > in contrary winds and diamonds are made under pressure.-Author Unknown > > " Knowing trees, I understand the meaning of patience. Knowing grass, I can > understand persistence. " - Hal Borland > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2011 Report Share Posted August 4, 2011 Cyndi, & nbsp;I am so sorry you have to once again experience a hardship. & nbsp;I will pray that God carry and you and your family through this time. & nbsp;God Bless You!!! Sent from my Palm Pre on the Now Network from Sprint On Aug 4, 2011 10:13 PM, Cookson & lt;macookson@... & gt; wrote: & nbsp; Cyndi, with the bone marrow he can go into remission?? I hope and pray that somehow, the T-21 " helps " a person with HLH, just like it " helps " with leukemia. You mustn't let go of hope. You have helped overcome so much! My prayers are with you all. Sent from my iPhone On Aug 4, 2011, at 9:08 PM, Liz DeSantis & lt;lizdesantis98@... & gt; wrote: & gt; OMG! Cyndi! My heart is breaking just reading how devastated you are & gt; feeling.... & gt; & gt; Liz & gt; & gt; On Thu, Aug 4, 2011 at 8:53 PM, cynthiamiltonburns & lt; & gt; cynthiamiltonburns@... & gt; wrote: & gt; & gt; & gt; ** & gt; & gt; & gt; & gt; & gt; & gt; Group, When was in the hospital and the Dr.'s were throwing out causes & gt; & gt; for 's illness but they were unsure I was scared. Now that 's test & gt; & gt; came back positive for HLH my world is closing in on me. Today the & gt; & gt; realization that there is no cure for HLH and his only chance is a bone & gt; & gt; marrow transplant really hit home. I am of course going to get more opinions & gt; & gt; on HLH as a true dx for but I am so upset. HLH is like a cancer & gt; & gt; although it is not cancer. I am posting a link with more information on & gt; & gt; 's condition. Tonight at dinner I cried looking at and realizing I & gt; & gt; am going to lose him. I will not give up without a fight but it still & gt; & gt; saddens me. Right now I do not know how long the Dr. is thinking he might & gt; & gt; have without a bone marrow transplant but from what I have read the patient & gt; & gt; has 3 yrs from onset that they pass away. I hope we can put this into & gt; & gt; remission. My heart is breaking right now. I kept telling the Dr.s something & gt; & gt; was wrong with . I am still not sure this is right. There will be more & gt; & gt; medical opinions. Cyndi B & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; -- & gt; " Anyone can give up, it's the easiest thing in the world to do. But to hold & gt; it together when everyone else would understand if you fell apart, that's & gt; true strength. " - Reeves & gt; " Let me win, but if I cannot win, let me be brave in the attempt'. - Special & gt; Olympics Motto-RIP Eunice Kennedy Shriver & gt; & gt; “When we long for life without difficulties, remind us that oaks grow strong & gt; in contrary winds and diamonds are made under pressure.-Author Unknown & gt; & gt; " Knowing trees, I understand the meaning of patience. Knowing grass, I can & gt; understand persistence. " - Hal Borland & gt; & gt; & gt; Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2011 Report Share Posted August 4, 2011 Sorry, T-21 is Down Syndrome. (trisomy 21). I read that people with DS tend to have a better prognosis with leukemia. I'm hoping that the same is true for HLH. I really feel for what you are going through. Sent from my iPhone On Aug 4, 2011, at 11:22 PM, " cynthiamiltonburns " wrote: > , Thanks for the prayers. I have not heard of T-21. What is that and how does it work? I am not letting go of hope that is all I have.Thanks for your information. Cyndi B > > > > > > > >> ** > > >> > > >> > > >> Group, When was in the hospital and the Dr.'s were throwing out causes > > >> for 's illness but they were unsure I was scared. Now that 's test > > >> came back positive for HLH my world is closing in on me. Today the > > >> realization that there is no cure for HLH and his only chance is a bone > > >> marrow transplant really hit home. I am of course going to get more opinions > > >> on HLH as a true dx for but I am so upset. HLH is like a cancer > > >> although it is not cancer. I am posting a link with more information on > > >> 's condition. Tonight at dinner I cried looking at and realizing I > > >> am going to lose him. I will not give up without a fight but it still > > >> saddens me. Right now I do not know how long the Dr. is thinking he might > > >> have without a bone marrow transplant but from what I have read the patient > > >> has 3 yrs from onset that they pass away. I hope we can put this into > > >> remission. My heart is breaking right now. I kept telling the Dr.s something > > >> was wrong with . I am still not sure this is right. There will be more > > >> medical opinions. Cyndi B > > >> > > >> > > >> > > > > > > > > > > > > -- > > > " Anyone can give up, it's the easiest thing in the world to do. But to hold > > > it together when everyone else would understand if you fell apart, that's > > > true strength. " - Reeves > > > " Let me win, but if I cannot win, let me be brave in the attempt'. - Special > > > Olympics Motto-RIP Eunice Kennedy Shriver > > > > > > “When we long for life without difficulties, remind us that oaks grow strong > > > in contrary winds and diamonds are made under pressure.-Author Unknown > > > > > > " Knowing trees, I understand the meaning of patience. Knowing grass, I can > > > understand persistence. " - Hal Borland > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2011 Report Share Posted August 4, 2011 , Oh duh. When you said leukemia it never occurred to me your were talking about Trisomy 21. I thought T-21 was a treatment for leukemia. thanks for the clarification. Cyndi B > > > > > > > >> ** > > > >> > > > >> > > > >> Group, When was in the hospital and the Dr.'s were throwing out causes > > > >> for 's illness but they were unsure I was scared. Now that 's test > > > >> came back positive for HLH my world is closing in on me. Today the > > > >> realization that there is no cure for HLH and his only chance is a bone > > > >> marrow transplant really hit home. I am of course going to get more opinions > > > >> on HLH as a true dx for but I am so upset. HLH is like a cancer > > > >> although it is not cancer. I am posting a link with more information on > > > >> 's condition. Tonight at dinner I cried looking at and realizing I > > > >> am going to lose him. I will not give up without a fight but it still > > > >> saddens me. Right now I do not know how long the Dr. is thinking he might > > > >> have without a bone marrow transplant but from what I have read the patient > > > >> has 3 yrs from onset that they pass away. I hope we can put this into > > > >> remission. My heart is breaking right now. I kept telling the Dr.s something > > > >> was wrong with . I am still not sure this is right. There will be more > > > >> medical opinions. Cyndi B > > > >> > > > >> > > > >> > > > > > > > > > > > > > > > > -- > > > > " Anyone can give up, it's the easiest thing in the world to do. But to hold > > > > it together when everyone else would understand if you fell apart, that's > > > > true strength. " - Reeves > > > > " Let me win, but if I cannot win, let me be brave in the attempt'. - Special > > > > Olympics Motto-RIP Eunice Kennedy Shriver > > > > > > > >  " When we long for life without difficulties, remind us that oaks grow strong > > > > in contrary winds and diamonds are made under pressure.-Author Unknown > > > > > > > > " Knowing trees, I understand the meaning of patience. Knowing grass, I can > > > > understand persistence. " - Hal Borland > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2011 Report Share Posted August 5, 2011 Cyndi, As I was re reading the txt you sent to me about HLH this very thought crossed my mind. I wasnt sure if there was a cure, or how they deal with it all. I can only imagine your feelings right now. has been through so much and you have been fighting to get someone to listen. My mother in law just yesterday asked how was doing. With a bone marrow transplant, does it say what his chances are? I know this is so rare that it makes getting answers even more difficult. Is there someone somewhere who is the " specialist " in this disease? I will be thinking about you, keeping you in my prayers of course, and sending you virtual hugs when you need them. Wish we all lived next door to each other so we could be there in the physical, how can we help kind of way. Love you girl! Holly HLH life Threatening Group, When was in the hospital and the Dr.'s were throwing out causes for 's illness but they were unsure I was scared. Now that 's test came back positive for HLH my world is closing in on me. Today the realization that there is no cure for HLH and his only chance is a bone marrow transplant really hit home. I am of course going to get more opinions on HLH as a true dx for but I am so upset. HLH is like a cancer although it is not cancer. I am posting a link with more information on 's condition. Tonight at dinner I cried looking at and realizing I am going to lose him. I will not give up without a fight but it still saddens me. Right now I do not know how long the Dr. is thinking he might have without a bone marrow transplant but from what I have read the patient has 3 yrs from onset that they pass away. I hope we can put this into remission. My heart is breaking right now. I kept telling the Dr.s something was wrong with . I am still not sure this is right. There will be more medical opinions. Cyndi B Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2011 Report Share Posted August 5, 2011 Boy a lot happens when I am busy with other things. Oh Cyndi hang in there, take a deep breath and continue the great way you have through all these illnesses with . You will do it as the great Mom and advocate you are. These guys sure keep the doctor's and us busy trying to figure out how to help them. 's biopsies and cultures from the Endoscopy/Colonoscopy last week all came back negative which is great. Dr says to watch him for the next couple weeks for the diarrhea and give him a call. We are stopping the ferrous sulfate (iron) as his blood tests are normal for the iron deficiency anemia. This is the gastroenterologist that told us in the past that had to take the iron indefinitely due to the duodenal web he has that was diagnosed 9 yrs ago. I have a call in to him to review about the web. Then in this heat our air conditioner went out. Luckily a son had a couple window AC to use and this week we had a new furnace and AC installed. The old one served us well for 27 yrs. Welcome to all the new people. A great group here for support and information. Louise, Mom to 48 <http://groups.yahoo.com/group//message/111773;_ylc=X3oDMTJyNDAzODA 4BF9TAzk3MzU5NzE1BGdycElkAzQxMDMwNQRncnBzcElkAzE3MDUwMTM0ODEEbXNnSWQDMTExNzc zBHNlYwNkbXNnBHNsawN2bXNnBHN0aW1lAzEzMTI1NDgxNzk-> HLH life Threatening Posted by: " cynthiamiltonburns " <mailto:cynthiamiltonburns@...?Subject=%20Re%3A%20HLH%20life%20Threate ning> cynthiamiltonburns@... <http://profiles.yahoo.com/cynthiamiltonburns> cynthiamiltonburns Thu Aug 4, 2011 5:54 pm (PDT) Group, When was in the hospital and the Dr.'s were throwing out causes for 's illness but they were unsure I was scared. Now that 's test came back positive for HLH my world is closing in on me. Today the realization that there is no cure for HLH and his only chance is a bone marrow transplant really hit home. I am of course going to get more opinions on HLH as a true dx for but I am so upset. HLH is like a cancer although it is not cancer. I am posting a link with more information on 's condition. Tonight at dinner I cried looking at and realizing I am going to lose him. I will not give up without a fight but it still saddens me. Right now I do not know how long the Dr. is thinking he might have without a bone marrow transplant but from what I have read the patient has 3 yrs from onset that they pass away. I hope we can put this into remission. My heart is breaking right now. I kept telling the Dr.s something was wrong with . I am still not sure this is right. There will be more medical opinions. Cyndi B Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2011 Report Share Posted August 5, 2011 Life threatening is not FATAL - only possibly. Considering 's life history of infection, I hope you are seeing an infectious disease specialist as well as his other docs? " *Because of the association between HLH and fungal infections, lysis-centrifugation blood cultures and fungal antigen testing should be considered for all patients with HLH. Even if an infection known to be associated with HLH has been confirmed, cell marker and T-cell receptor gene rearrangement tests should be performed on bone marrow or other tissue specimens to determine whether an underlying T-cell lymphoma is present*. " Quoted from an explanation of this disease. There is treatment IF this is the true dx. I also read that Cincinatti's Children's Hospital has the best info on this disease process. On Thu, Aug 4, 2011 at 9:08 PM, Liz DeSantis wrote: > OMG! Cyndi! My heart is breaking just reading how devastated you are > feeling.... > > Liz > > On Thu, Aug 4, 2011 at 8:53 PM, cynthiamiltonburns < > cynthiamiltonburns@...> wrote: > > > ** > > > > > > Group, When was in the hospital and the Dr.'s were throwing out > causes > > for 's illness but they were unsure I was scared. Now that 's > test > > came back positive for HLH my world is closing in on me. Today the > > realization that there is no cure for HLH and his only chance is a bone > > marrow transplant really hit home. I am of course going to get more > opinions > > on HLH as a true dx for but I am so upset. HLH is like a cancer > > although it is not cancer. I am posting a link with more information on > > 's condition. Tonight at dinner I cried looking at and realizing > I > > am going to lose him. I will not give up without a fight but it still > > saddens me. Right now I do not know how long the Dr. is thinking he might > > have without a bone marrow transplant but from what I have read the > patient > > has 3 yrs from onset that they pass away. I hope we can put this into > > remission. My heart is breaking right now. I kept telling the Dr.s > something > > was wrong with . I am still not sure this is right. There will be > more > > medical opinions. Cyndi B > > > > > > > > > > -- > " Anyone can give up, it's the easiest thing in the world to do. But to hold > it together when everyone else would understand if you fell apart, that's > true strength. " - Reeves > " Let me win, but if I cannot win, let me be brave in the attempt'. - > Special > Olympics Motto-RIP Eunice Kennedy Shriver > > “When we long for life without difficulties, remind us that oaks grow > strong > in contrary winds and diamonds are made under pressure.-Author Unknown > > " Knowing trees, I understand the meaning of patience. Knowing grass, I can > understand persistence. " - Hal Borland > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2011 Report Share Posted August 5, 2011 Holly, I am in the process of researching finding an expert Dr. on this subject. From what I have read the Bone Marrow transplant is the only chance to save his life.However some of the meds can maybe put HLH in remission. Not sure at this point how long has had the dx. I know the Cincinnati Children s Hospital claims to have done the most bone marrow transplants to help kids with HLH. I wrote to Lance Armstrong's Dr. at IU Dr. Lawrence Einhorn. I contacted him because I was thinking since HLH is like a cancer maybe he knew an expert in this field. Dr. Einhorn emailed me back this morning morning said he did not know anyone. Dr. Einhorn is a wonderful person that tried to help me from afar with my mothers lung Cancer. The Dr.'s here screwed her up and I do not trust them. Especially after all I have been through again recently. I appreciate the prayers and cyber hugs. Right back at you. How is Jakey doing? Cyndi > > Cyndi, > As I was re reading the txt you sent to me about HLH this very thought crossed my mind. I wasnt sure if there was a cure, or how they deal with it all. I can only imagine your feelings right now. has been through so much and you have been fighting to get someone to listen. My mother in law just yesterday asked how was doing. With a bone marrow transplant, does it say what his chances are? I know this is so rare that it makes getting answers even more difficult. Is there someone somewhere who is the " specialist " in this disease? I will be thinking about you, keeping you in my prayers of course, and sending you virtual hugs when you need them. Wish we all lived next door to each other so we could be there in the physical, how can we help kind of way. Love you girl! > Holly > > HLH life Threatening > > > > Group, When was in the hospital and the Dr.'s were throwing out causes for 's illness but they were unsure I was scared. Now that 's test came back positive for HLH my world is closing in on me. Today the realization that there is no cure for HLH and his only chance is a bone marrow transplant really hit home. I am of course going to get more opinions on HLH as a true dx for but I am so upset. HLH is like a cancer although it is not cancer. I am posting a link with more information on 's condition. Tonight at dinner I cried looking at and realizing I am going to lose him. I will not give up without a fight but it still saddens me. Right now I do not know how long the Dr. is thinking he might have without a bone marrow transplant but from what I have read the patient has 3 yrs from onset that they pass away. I hope we can put this into remission. My heart is breaking right now. I kept telling the Dr.s something was wrong with . I am still not sure this is right. There will be more medical opinions. Cyndi B > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2011 Report Share Posted August 5, 2011 Jake is actually doing very well. We started Abilify and he is off the tenex. The abilify has seemed to bring him back to his happy place. He still has some outburst from time to time, but I think that is more just a teen thing. He is signing more, talking more, and engaged more. He loves his aid, is participating in Tball, and did great at special olympics. He still has his moments no doubt but for right now, he is soooo much better. Keep me posted on . Makes me sad that we dont live closer. Love you Holly HLH life Threatening > > > > Group, When was in the hospital and the Dr.'s were throwing out causes for 's illness but they were unsure I was scared. Now that 's test came back positive for HLH my world is closing in on me. Today the realization that there is no cure for HLH and his only chance is a bone marrow transplant really hit home. I am of course going to get more opinions on HLH as a true dx for but I am so upset. HLH is like a cancer although it is not cancer. I am posting a link with more information on 's condition. Tonight at dinner I cried looking at and realizing I am going to lose him. I will not give up without a fight but it still saddens me. Right now I do not know how long the Dr. is thinking he might have without a bone marrow transplant but from what I have read the patient has 3 yrs from onset that they pass away. I hope we can put this into remission. My heart is breaking right now. I kept telling the Dr.s something was wrong with . I am still not sure this is right. There will be more medical opinions. Cyndi B > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2011 Report Share Posted August 5, 2011 Sara, one of the stories I read about how Cinci was a expert hospital was written by a parent of 2 children that did not make it from HLH despite the bond marrow transplant. The 1st child got it and was tested to see if it was genetic and it was. The 2nd child did not test to have HLH and was healthy but since it was genetic the Dr.'s told the mother that this child should be treated while healthy for the HLH. The child passed away despite efforts to say the child. It is very scary. They are planning on doing the testing you mentioned.I am very skeptical of the ability of these local Dr. for all the mistakes I have seen here. has many Dr.'s including the infectious disease, endocrinologist,Rhumatoidologist,Kidney, Liver, Pediatrician,and Dr. Mumper DAN pediatrician oh plus his new local Ped that sits on the board for Down Syndrome of Lou. The problem is all these Dr.'s are not communicating to each other since he is no longer in the hospital. I am the go between and I need help. The infectious disease Dr.'s office has been instrumental in trying to help the most. The new Ped has been off and out of town, including this week. I have had to wait for answers to long. I have made myself thousands of notes and questions for the Dr. however when they call me back I am in the car, the restroom, etc. I am really on the edge. I appreciate your expert medical advice and value your thoughts. Thanks for helping. Cyndi B > > > > > ** > > > > > > > > > Group, When was in the hospital and the Dr.'s were throwing out > > causes > > > for 's illness but they were unsure I was scared. Now that 's > > test > > > came back positive for HLH my world is closing in on me. Today the > > > realization that there is no cure for HLH and his only chance is a bone > > > marrow transplant really hit home. I am of course going to get more > > opinions > > > on HLH as a true dx for but I am so upset. HLH is like a cancer > > > although it is not cancer. I am posting a link with more information on > > > 's condition. Tonight at dinner I cried looking at and realizing > > I > > > am going to lose him. I will not give up without a fight but it still > > > saddens me. Right now I do not know how long the Dr. is thinking he might > > > have without a bone marrow transplant but from what I have read the > > patient > > > has 3 yrs from onset that they pass away. I hope we can put this into > > > remission. My heart is breaking right now. I kept telling the Dr.s > > something > > > was wrong with . I am still not sure this is right. There will be > > more > > > medical opinions. Cyndi B > > > > > > > > > > > > > > > > > -- > > " Anyone can give up, it's the easiest thing in the world to do. But to hold > > it together when everyone else would understand if you fell apart, that's > > true strength. " - Reeves > > " Let me win, but if I cannot win, let me be brave in the attempt'. - > > Special > > Olympics Motto-RIP Eunice Kennedy Shriver > > > > “When we long for life without difficulties, remind us that oaks grow > > strong > > in contrary winds and diamonds are made under pressure.-Author Unknown > > > > " Knowing trees, I understand the meaning of patience. Knowing grass, I can > > understand persistence. " - Hal Borland > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2011 Report Share Posted August 5, 2011 Holly, I am so glad to hear that Jakey is doing better. Hey I am sure you would take the " moments " anytime over constantly acting out. He plays T-ball that is wonderful. I wish we lived closed too but at least we can talk on the phone and online it does help. Cyndi b > > > > Cyndi, > > As I was re reading the txt you sent to me about HLH this very thought crossed my mind. I wasnt sure if there was a cure, or how they deal with it all. I can only imagine your feelings right now. has been through so much and you have been fighting to get someone to listen. My mother in law just yesterday asked how was doing. With a bone marrow transplant, does it say what his chances are? I know this is so rare that it makes getting answers even more difficult. Is there someone somewhere who is the " specialist " in this disease? I will be thinking about you, keeping you in my prayers of course, and sending you virtual hugs when you need them. Wish we all lived next door to each other so we could be there in the physical, how can we help kind of way. Love you girl! > > Holly > > > > HLH life Threatening > > > > > > > > Group, When was in the hospital and the Dr.'s were throwing out causes for 's illness but they were unsure I was scared. Now that 's test came back positive for HLH my world is closing in on me. Today the realization that there is no cure for HLH and his only chance is a bone marrow transplant really hit home. I am of course going to get more opinions on HLH as a true dx for but I am so upset. HLH is like a cancer although it is not cancer. I am posting a link with more information on 's condition. Tonight at dinner I cried looking at and realizing I am going to lose him. I will not give up without a fight but it still saddens me. Right now I do not know how long the Dr. is thinking he might have without a bone marrow transplant but from what I have read the patient has 3 yrs from onset that they pass away. I hope we can put this into remission. My heart is breaking right now. I kept telling the Dr.s something was wrong with . I am still not sure this is right. There will be more medical opinions. Cyndi B > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2011 Report Share Posted August 5, 2011 No expert - never would I claim that - just an inquisitive mother who likes to research - and like you- I KNOW that doctors are not miracle workers - only PRACTICING an art. And that if we cannot tell them what is happening, they cannot see what isn't visible. As to Cincinnati - if that is the best and they are having some problems, we will have to look further and father. IT is so much cloer to you, that I hoped that might be the place for answers. On Fri, Aug 5, 2011 at 1:27 PM, cynthiamiltonburns < cynthiamiltonburns@...> wrote: > ** > > > Sara, one of the stories I read about how Cinci was a expert hospital was > written by a parent of 2 children that did not make it from HLH despite the > bond marrow transplant. The 1st child got it and was tested to see if it was > genetic and it was. The 2nd child did not test to have HLH and was healthy > but since it was genetic the Dr.'s told the mother that this child should be > treated while healthy for the HLH. The child passed away despite efforts to > say the child. It is very scary. They are planning on doing the testing you > mentioned.I am very skeptical of the ability of these local Dr. for all the > mistakes I have seen here. has many Dr.'s including the infectious > disease, endocrinologist,Rhumatoidologist,Kidney, Liver, Pediatrician,and > Dr. Mumper DAN pediatrician oh plus his new local Ped that sits on the board > for Down Syndrome of Lou. The problem is all these Dr.'s are not > communicating to each other since he is no longer in the hospital. I am the > go between and I need help. The infectious disease Dr.'s office has been > instrumental in trying to help the most. The new Ped has been off and out of > town, including this week. I have had to wait for answers to long. I have > made myself thousands of notes and questions for the Dr. however when they > call me back I am in the car, the restroom, etc. I am really on the edge. I > appreciate your expert medical advice and value your thoughts. Thanks for > helping. Cyndi B > > > > > > > > > ** > > > > > > > > > > > > Group, When was in the hospital and the Dr.'s were throwing out > > > causes > > > > for 's illness but they were unsure I was scared. Now that 's > > > test > > > > came back positive for HLH my world is closing in on me. Today the > > > > realization that there is no cure for HLH and his only chance is a > bone > > > > marrow transplant really hit home. I am of course going to get more > > > opinions > > > > on HLH as a true dx for but I am so upset. HLH is like a cancer > > > > although it is not cancer. I am posting a link with more information > on > > > > 's condition. Tonight at dinner I cried looking at and > realizing > > > I > > > > am going to lose him. I will not give up without a fight but it still > > > > saddens me. Right now I do not know how long the Dr. is thinking he > might > > > > have without a bone marrow transplant but from what I have read the > > > patient > > > > has 3 yrs from onset that they pass away. I hope we can put this into > > > > remission. My heart is breaking right now. I kept telling the Dr.s > > > something > > > > was wrong with . I am still not sure this is right. There will be > > > more > > > > medical opinions. Cyndi B > > > > > > > > > > > > > > > > > > > > > > > > -- > > > " Anyone can give up, it's the easiest thing in the world to do. But to > hold > > > it together when everyone else would understand if you fell apart, > that's > > > true strength. " - Reeves > > > " Let me win, but if I cannot win, let me be brave in the attempt'. - > > > Special > > > Olympics Motto-RIP Eunice Kennedy Shriver > > > > > > “When we long for life without difficulties, remind us that oaks grow > > > strong > > > in contrary winds and diamonds are made under pressure.-Author Unknown > > > > > > " Knowing trees, I understand the meaning of patience. Knowing grass, I > can > > > understand persistence. " - Hal Borland > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2011 Report Share Posted August 5, 2011 Louise, I am glad to hear that 's testing came back negative that a wonderful news. If everything came back negative what were the Dr.'s thinking? You air and furnace went out. I feel like it is my fault. My bad luck seems to be rubbing off on others. On the issue of iron 's is a little low and they said he needs to take iron. However iron can be hard on your liver and so since 's liver was so sick on this hospital stay I am trying to make sure it is okay for him to take. He is not anemic yet. His liver has recovered but the Dr. are being cautious not to put him on meds that can cause liver damage like Depakote,etc. Do they know what caused 's are levels to be low in the first place? Oh about the advocate well I have to speak for the child that cannot speak. I take care of the way I would want someone to take care of me if I were in his situation and could not speak.We do what we have to in order of being giving our children a voice. You are a wonderful advocate as well. Thanks for your support. Cyndi B > > Boy a lot happens when I am busy with other things. Oh Cyndi hang in there, > take a deep breath and continue the great way you have through all these > illnesses with . You will do it as the great Mom and advocate you are. > These guys sure keep the doctor's and us busy trying to figure out how to > help them. > > > > 's biopsies and cultures from the Endoscopy/Colonoscopy last week all > came back negative which is great. Dr says to watch him for the next couple > weeks for the diarrhea and give him a call. We are stopping the ferrous > sulfate (iron) as his blood tests are normal for the iron deficiency anemia. > This is the gastroenterologist that told us in the past that had to > take the iron indefinitely due to the duodenal web he has that was diagnosed > 9 yrs ago. I have a call in to him to review about the web. Then in this > heat our air conditioner went out. Luckily a son had a couple window AC to > use and this week we had a new furnace and AC installed. The old one served > us well for 27 yrs. > > > > Welcome to all the new people. A great group here for support and > information. > > > > Louise, Mom to 48 > > > > > > <http://groups.yahoo.com/group//message/111773;_ylc=X3oDMTJyNDAzODA > 4BF9TAzk3MzU5NzE1BGdycElkAzQxMDMwNQRncnBzcElkAzE3MDUwMTM0ODEEbXNnSWQDMTExNzc > zBHNlYwNkbXNnBHNsawN2bXNnBHN0aW1lAzEzMTI1NDgxNzk-> HLH life Threatening > > > Posted by: " cynthiamiltonburns " > <mailto:cynthiamiltonburns@...?Subject=%20Re%3A%20HLH%20life%20Threate > ning> cynthiamiltonburns@... > <http://profiles.yahoo.com/cynthiamiltonburns> cynthiamiltonburns > > > Thu Aug 4, 2011 5:54 pm (PDT) > > > Group, When was in the hospital and the Dr.'s were throwing out causes > for 's illness but they were unsure I was scared. Now that 's test > came back positive for HLH my world is closing in on me. Today the > realization that there is no cure for HLH and his only chance is a bone > marrow transplant really hit home. I am of course going to get more opinions > on HLH as a true dx for but I am so upset. HLH is like a cancer > although it is not cancer. I am posting a link with more information on > 's condition. Tonight at dinner I cried looking at and realizing I > am going to lose him. I will not give up without a fight but it still > saddens me. Right now I do not know how long the Dr. is thinking he might > have without a bone marrow transplant but from what I have read the patient > has 3 yrs from onset that they pass away. I hope we can put this into > remission. My heart is breaking right now. I kept telling the Dr.s something > was wrong with . I am still not sure this is right. There will be more > medical opinions. Cyndi B > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2011 Report Share Posted August 5, 2011 Sara, OH you are being modest my friend. You are mom expert with plenty of nursing and Doctoring experience. Dr.'s are not miracle workers for sure and they practicing is not an exact science. They are experimenting on our kids. They sure cannot see what isn't visible true. You are a great help and friend. Thanks Cyndi B > > > > > > > > > ** > > > > > > > > > > > > > > > Group, When was in the hospital and the Dr.'s were throwing out > > > > causes > > > > > for 's illness but they were unsure I was scared. Now that 's > > > > test > > > > > came back positive for HLH my world is closing in on me. Today the > > > > > realization that there is no cure for HLH and his only chance is a > > bone > > > > > marrow transplant really hit home. I am of course going to get more > > > > opinions > > > > > on HLH as a true dx for but I am so upset. HLH is like a cancer > > > > > although it is not cancer. I am posting a link with more information > > on > > > > > 's condition. Tonight at dinner I cried looking at and > > realizing > > > > I > > > > > am going to lose him. I will not give up without a fight but it still > > > > > saddens me. Right now I do not know how long the Dr. is thinking he > > might > > > > > have without a bone marrow transplant but from what I have read the > > > > patient > > > > > has 3 yrs from onset that they pass away. I hope we can put this into > > > > > remission. My heart is breaking right now. I kept telling the Dr.s > > > > something > > > > > was wrong with . I am still not sure this is right. There will be > > > > more > > > > > medical opinions. Cyndi B > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > -- > > > > " Anyone can give up, it's the easiest thing in the world to do. But to > > hold > > > > it together when everyone else would understand if you fell apart, > > that's > > > > true strength. " - Reeves > > > > " Let me win, but if I cannot win, let me be brave in the attempt'. - > > > > Special > > > > Olympics Motto-RIP Eunice Kennedy Shriver > > > > > > > >  " When we long for life without difficulties, remind us that oaks grow > > > > strong > > > > in contrary winds and diamonds are made under pressure.-Author Unknown > > > > > > > > " Knowing trees, I understand the meaning of patience. Knowing grass, I > > can > > > > understand persistence. " - Hal Borland > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2011 Report Share Posted August 20, 2011 Sonya, sorry I have been out of town and just now responding to your post. They prayers may have been answered. 's new Pediatrician did not believe that had HLH so he called the oncologist at the hospital in charge of overseeing these cases. Since HLH is a blood disorder an oncologist is the person that would treat . After reviewing 's hospital chart and records he said that does not have HLH. However I am still considering taking him to Cinn Children's hospital for a workup. is still not feeling 100% better and is fighting a sinus infection right now. 's new pediatrician is much on board for anything I want to try. Thanks again for the prayers. Cyndi B > > & gt; > > & gt; & gt; ** > > & gt; & gt; > > & gt; & gt; > > & gt; & gt; Group, When was in the hospital and the Dr.'s were throwing out causes > > & gt; & gt; for 's illness but they were unsure I was scared. Now that 's test > > & gt; & gt; came back positive for HLH my world is closing in on me. Today the > > & gt; & gt; realization that there is no cure for HLH and his only chance is a bone > > & gt; & gt; marrow transplant really hit home. I am of course going to get more opinions > > & gt; & gt; on HLH as a true dx for but I am so upset. HLH is like a cancer > > & gt; & gt; although it is not cancer. I am posting a link with more information on > > & gt; & gt; 's condition. Tonight at dinner I cried looking at and realizing I > > & gt; & gt; am going to lose him. I will not give up without a fight but it still > > & gt; & gt; saddens me. Right now I do not know how long the Dr. is thinking he might > > & gt; & gt; have without a bone marrow transplant but from what I have read the patient > > & gt; & gt; has 3 yrs from onset that they pass away. I hope we can put this into > > & gt; & gt; remission. My heart is breaking right now. I kept telling the Dr.s something > > & gt; & gt; was wrong with . I am still not sure this is right. There will be more > > & gt; & gt; medical opinions. Cyndi B > > & gt; & gt; > > & gt; & gt; > > & gt; & gt; > > & gt; > > & gt; > > & gt; > > & gt; -- > > & gt; " Anyone can give up, it's the easiest thing in the world to do. But to hold > > & gt; it together when everyone else would understand if you fell apart, that's > > & gt; true strength. " - Reeves > > & gt; " Let me win, but if I cannot win, let me be brave in the attempt'. - Special > > & gt; Olympics Motto-RIP Eunice Kennedy Shriver > > & gt; > > & gt; “When we long for life without difficulties, remind us that oaks grow strong > > & gt; in contrary winds and diamonds are made under pressure.-Author Unknown > > & gt; > > & gt; " Knowing trees, I understand the meaning of patience. Knowing grass, I can > > & gt; understand persistence. " - Hal Borland > > & gt; > > & gt; > > & gt; Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2011 Report Share Posted August 20, 2011 What??!!! I mean, it's great news but I'm angry that the Dr's put you through all that! . Hope you get answers. I don't mean to sound like a broken record on this, but have you considered acupuncture? It's really good at helping things that western MD's can't figure out. He may not allow the needles but if the practitioner is an Herbalist, that might help. I know, crazy out-there. But it helped me in a huge way when Dr's were telling me they couldn't figure out what was wrong. Hugs, girl! Sent from my iPhone On Aug 20, 2011, at 6:54 AM, " cynthiamiltonburns " wrote: > Sonya, sorry I have been out of town and just now responding to your post. They prayers may have been answered. 's new Pediatrician did not believe that had HLH so he called the oncologist at the hospital in charge of overseeing these cases. Since HLH is a blood disorder an oncologist is the person that would treat . After reviewing 's hospital chart and records he said that does not have HLH. However I am still considering taking him to Cinn Children's hospital for a workup. is still not feeling 100% better and is fighting a sinus infection right now. 's new pediatrician is much on board for anything I want to try. Thanks again for the prayers. Cyndi B > > > > > > & gt; > > > > & gt; & gt; ** > > > > & gt; & gt; > > > > & gt; & gt; > > > > & gt; & gt; Group, When was in the hospital and the Dr.'s were throwing out causes > > > > & gt; & gt; for 's illness but they were unsure I was scared. Now that 's test > > > > & gt; & gt; came back positive for HLH my world is closing in on me. Today the > > > > & gt; & gt; realization that there is no cure for HLH and his only chance is a bone > > > > & gt; & gt; marrow transplant really hit home. I am of course going to get more opinions > > > > & gt; & gt; on HLH as a true dx for but I am so upset. HLH is like a cancer > > > > & gt; & gt; although it is not cancer. I am posting a link with more information on > > > > & gt; & gt; 's condition. Tonight at dinner I cried looking at and realizing I > > > > & gt; & gt; am going to lose him. I will not give up without a fight but it still > > > > & gt; & gt; saddens me. Right now I do not know how long the Dr. is thinking he might > > > > & gt; & gt; have without a bone marrow transplant but from what I have read the patient > > > > & gt; & gt; has 3 yrs from onset that they pass away. I hope we can put this into > > > > & gt; & gt; remission. My heart is breaking right now. I kept telling the Dr.s something > > > > & gt; & gt; was wrong with . I am still not sure this is right. There will be more > > > > & gt; & gt; medical opinions. Cyndi B > > > > & gt; & gt; > > > > & gt; & gt; > > > > & gt; & gt; > > > > & gt; > > > > & gt; > > > > & gt; > > > > & gt; -- > > > > & gt; " Anyone can give up, it's the easiest thing in the world to do. But to hold > > > > & gt; it together when everyone else would understand if you fell apart, that's > > > > & gt; true strength. " - Reeves > > > > & gt; " Let me win, but if I cannot win, let me be brave in the attempt'. - Special > > > > & gt; Olympics Motto-RIP Eunice Kennedy Shriver > > > > & gt; > > > > & gt; “When we long for life without difficulties, remind us that oaks grow strong > > > > & gt; in contrary winds and diamonds are made under pressure.-Author Unknown > > > > & gt; > > > > & gt; " Knowing trees, I understand the meaning of patience. Knowing grass, I can > > > > & gt; understand persistence. " - Hal Borland > > > > & gt; > > > > & gt; > > > > & gt; Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2011 Report Share Posted August 20, 2011 Question: Has a HEMATOLOGIST (an oncologist whose specialty is blood dyscrasias ) looked at 's file? IF not - why not? I agree with MAry - off the wall dx without THE SPECIALIST for that issue being involved?? > ** > > > What??!!! I mean, it's great news but I'm angry that the Dr's put you > through all that! . Hope you get answers. I don't mean to sound like a > broken record on this, but have you considered acupuncture? It's really good > at helping things that western MD's can't figure out. He may not allow the > needles but if the practitioner is an Herbalist, that might help. I know, > crazy out-there. But it helped me in a huge way when Dr's were telling me > they couldn't figure out what was wrong. > > Hugs, girl! > > > > Sent from my iPhone > > On Aug 20, 2011, at 6:54 AM, " cynthiamiltonburns " < > cynthiamiltonburns@...> wrote: > > > Sonya, sorry I have been out of town and just now responding to your > post. They prayers may have been answered. 's new Pediatrician did not > believe that had HLH so he called the oncologist at the hospital in > charge of overseeing these cases. Since HLH is a blood disorder an > oncologist is the person that would treat . After reviewing 's > hospital chart and records he said that does not have HLH. However I am > still considering taking him to Cinn Children's hospital for a workup. > is still not feeling 100% better and is fighting a sinus infection right > now. 's new pediatrician is much on board for anything I want to try. > Thanks again for the prayers. Cyndi B > > > > > > > > > > & gt; > > > > > > & gt; & gt; ** > > > > > > & gt; & gt; > > > > > > & gt; & gt; > > > > > > & gt; & gt; Group, When was in the hospital and the Dr.'s were > throwing out causes > > > > > > & gt; & gt; for 's illness but they were unsure I was scared. Now that > 's test > > > > > > & gt; & gt; came back positive for HLH my world is closing in on me. Today > the > > > > > > & gt; & gt; realization that there is no cure for HLH and his only chance > is a bone > > > > > > & gt; & gt; marrow transplant really hit home. I am of course going to get > more opinions > > > > > > & gt; & gt; on HLH as a true dx for but I am so upset. HLH is like a > cancer > > > > > > & gt; & gt; although it is not cancer. I am posting a link with more > information on > > > > > > & gt; & gt; 's condition. Tonight at dinner I cried looking at > and realizing I > > > > > > & gt; & gt; am going to lose him. I will not give up without a fight but > it still > > > > > > & gt; & gt; saddens me. Right now I do not know how long the Dr. is > thinking he might > > > > > > & gt; & gt; have without a bone marrow transplant but from what I have > read the patient > > > > > > & gt; & gt; has 3 yrs from onset that they pass away. I hope we can put > this into > > > > > > & gt; & gt; remission. My heart is breaking right now. I kept telling the > Dr.s something > > > > > > & gt; & gt; was wrong with . I am still not sure this is right. There > will be more > > > > > > & gt; & gt; medical opinions. Cyndi B > > > > > > & gt; & gt; > > > > > > & gt; & gt; > > > > > > & gt; & gt; > > > > > > & gt; > > > > > > & gt; > > > > > > & gt; > > > > > > & gt; -- > > > > > > & gt; " Anyone can give up, it's the easiest thing in the world to do. > But to hold > > > > > > & gt; it together when everyone else would understand if you fell apart, > that's > > > > > > & gt; true strength. " - Reeves > > > > > > & gt; " Let me win, but if I cannot win, let me be brave in the attempt'. > - Special > > > > > > & gt; Olympics Motto-RIP Eunice Kennedy Shriver > > > > > > & gt; > > > > > > & gt; “When we long for life without difficulties, remind us that oaks > grow strong > > > > > > & gt; in contrary winds and diamonds are made under pressure.-Author > Unknown > > > > > > & gt; > > > > > > & gt; " Knowing trees, I understand the meaning of patience. Knowing > grass, I can > > > > > > & gt; understand persistence. " - Hal Borland > > > > > > & gt; > > > > > > & gt; > > > > > > & gt; Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2011 Report Share Posted August 20, 2011 Cyndi, I am so happy to hear they ruled out HLH. & nbsp;I hope you can find an answer soon though, so can start feeling better. Sent from my Palm Pre on the Now Network from Sprint On Aug 20, 2011 5:56 AM, cynthiamiltonburns & lt;cynthiamiltonburns@... & gt; wrote: & nbsp; Sonya, sorry I have been out of town and just now responding to your post. They prayers may have been answered. 's new Pediatrician did not believe that had HLH so he called the oncologist at the hospital in charge of overseeing these cases. Since HLH is a blood disorder an oncologist is the person that would treat . After reviewing 's hospital chart and records he said that does not have HLH. However I am still considering taking him to Cinn Children's hospital for a workup. is still not feeling 100% better and is fighting a sinus infection right now. 's new pediatrician is much on board for anything I want to try. Thanks again for the prayers. Cyndi B & gt; & gt; & amp;gt; & gt; & gt; & amp;gt; & amp;gt; ** & gt; & gt; & amp;gt; & amp;gt; & gt; & gt; & amp;gt; & amp;gt; & gt; & gt; & amp;gt; & amp;gt; Group, When was in the hospital and the Dr.'s were throwing out causes & gt; & gt; & amp;gt; & amp;gt; for 's illness but they were unsure I was scared. Now that 's test & gt; & gt; & amp;gt; & amp;gt; came back positive for HLH my world is closing in on me. Today the & gt; & gt; & amp;gt; & amp;gt; realization that there is no cure for HLH and his only chance is a bone & gt; & gt; & amp;gt; & amp;gt; marrow transplant really hit home. I am of course going to get more opinions & gt; & gt; & amp;gt; & amp;gt; on HLH as a true dx for but I am so upset. HLH is like a cancer & gt; & gt; & amp;gt; & amp;gt; although it is not cancer. I am posting a link with more information on & gt; & gt; & amp;gt; & amp;gt; 's condition. Tonight at dinner I cried looking at and realizing I & gt; & gt; & amp;gt; & amp;gt; am going to lose him. I will not give up without a fight but it still & gt; & gt; & amp;gt; & amp;gt; saddens me. Right now I do not know how long the Dr. is thinking he might & gt; & gt; & amp;gt; & amp;gt; have without a bone marrow transplant but from what I have read the patient & gt; & gt; & amp;gt; & amp;gt; has 3 yrs from onset that they pass away. I hope we can put this into & gt; & gt; & amp;gt; & amp;gt; remission. My heart is breaking right now. I kept telling the Dr.s something & gt; & gt; & amp;gt; & amp;gt; was wrong with . I am still not sure this is right. There will be more & gt; & gt; & amp;gt; & amp;gt; medical opinions. Cyndi B & gt; & gt; & amp;gt; & amp;gt; & gt; & gt; & amp;gt; & amp;gt; & gt; & gt; & amp;gt; & amp;gt; & gt; & gt; & amp;gt; & gt; & gt; & amp;gt; & gt; & gt; & amp;gt; & gt; & gt; & amp;gt; -- & gt; & gt; & amp;gt; " Anyone can give up, it's the easiest thing in the world to do. But to hold & gt; & gt; & amp;gt; it together when everyone else would understand if you fell apart, that's & gt; & gt; & amp;gt; true strength. " - Reeves & gt; & gt; & amp;gt; " Let me win, but if I cannot win, let me be brave in the attempt'. - Special & gt; & gt; & amp;gt; Olympics Motto-RIP Eunice Kennedy Shriver & gt; & gt; & amp;gt; & gt; & gt; & amp;gt; “When we long for life without difficulties, remind us that oaks grow strong & gt; & gt; & amp;gt; in contrary winds and diamonds are made under pressure.-Author Unknown & gt; & gt; & amp;gt; & gt; & gt; & amp;gt; " Knowing trees, I understand the meaning of patience. Knowing grass, I can & gt; & gt; & amp;gt; understand persistence. " - Hal Borland & gt; & gt; & amp;gt; & gt; & gt; & amp;gt; & gt; & gt; & amp;gt; Quote Link to comment Share on other sites More sharing options...
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